Hearing that my lab work is normal does not mean that my rheumatoid arthritis is not active.

If I don’t feel fine, I’m not fine.

In the first couple of years after my diagnosis I was, for the most part, a listener at my appointments with my rheumatologist. I took a notebook with me to appointments but it was mostly to take notes. At every monthly appointment, I completed the visit survey and to the best of my memory, I noted my pain level that day, over the previous seven days, and over the last month. It’s all too easy to generalize how one’s feeling at a monthly appointment. The moments of extreme pain, as compared to the chronic pain I felt, became a blurry memory as I ranked the level of difficulty for performing such tasks as getting out of bed, lifting a cup with both hands, or pulling the shower knob on.

My survey responses all reflected that I feel pain and I am not fine, yet when called back for my appointment, my rheumatologist shared that my blood tests look pretty good so it seems my treatment is working.

Huh? How is it that I could feel so awful and be unable to perform the most basic of physical tasks that I used to be able to do with ease?

Blood test results don’t always reveal our symptoms.

While my blood tests revealed elevated inflammation levels, many of the tests were declared normal, and my body was communicating otherwise in a palpable way. I knew the best way to talk with my doctor about changing treatment was to be honest about how I was doing and to show a pattern of pain and less than optimal quality of life.

That’s when I began tracking my symptoms with ArthritisPower.

Through the app on my phone, I tracked my levels of pain, fatigue, sleep, ability to accomplish basic daily tasks, medications, as well as anxiety and depression levels. By using it every few days to every week, I have been able to recognize patterns that correlate to flares or to use or non-use of certain medications. I add notes about specific symptoms so that when the appointment finally arises, I never forget about the origin of my pain. I created a report for the last 6 months to show my doctor and our conversation was magical. There’s nothing like the feeling of having qualitative data transformed to quantitative data for my doctor, who loves data, to decipher and for him to know that I take my health seriously enough to track my symptoms and to recognize that a treatment change was needed. My levels of pain and fatigue were consistently elevated and only increasing.

It became clear that I value how my body is behaving over blood test results alone and my doctor needs to know this.

If we don’t share how we are doing outside of the blood tests, our doctors will never know how we are truly doing. My experience directed me to be more aware of my body’s response to treatment, stress, diet, exercise, and sleep by tracking slight changes over time that can reveal an underlying problem within. My advice to anyone who might feel like they are not being heard at their appointments is to start tracking your symptoms then bring that report to your doctor to discuss it and take charge of your arthritis treatment.

About the Author:

Shelley was diagnosed with Rheumatoid Arthritis and Celiac Disease at the age of 42. She has found the most success with her current biologic along with a combination of medicines, diet, and exercise.

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